NOT IN KANSAS AMYMORE: A PRAIRIE BOY'S LIFE
A New Voice and A New Beginning
I was brought to my knees the day my husband Bob was diagnosed with ALS, It was 12years ago. After we spoke with our doctor, a social worker sat us down and said it short and NOT so sweet. "You are on a downhill ride and there is NO WAY OFF. " She also said, "Bob will first lose all function in his arms and legs, then his hands, and then his lungs. He will die of respiratory failure --but then, we all die of respiratory failure."
We both abruptly left the doctor's offices, stunned by the devastating prognosis. I thought to myself, "How are we going to go forward?" There was really nothing either one of us could say at the time. It was such a shock.
But then we began to read about ALS, we read, read, and read some more. Then we talked and talked. Bob approached his diagnosis like everything else . . . as a scientist. He studied medical journals and textbooks, and searched for medical school websites. And asked lots of questions. And forward we went --one day at a time. The losses come every day with ALS. Sometimes subtle, and sometimes knocking you on your back.
Bob's changes came from the legs up. First, he became fatigued walking five or six blocks, then his fatigue came after only half a block. Then he could not go up or down stairs, or jump and then came the stumbles and falls. After that, a cane, then a walker and then, a wheelchair. Next, Bob lost the use of his arms, so that he could not lift even a book or bring a glass of water or food to his mouth. Not yet finished with the losses, ALS then took away Bob's use of his hands. No longer able to hold a pen, he no longer could write or sign his name. A profound loss to his lifelong career as a patent lawyer --writing, dictating, editing --all day, everyday. And yet, Bob continued his law practice throughout all these losses. We found a medical student to shower and dress Bob in the morning and another young nurse's helper to be his hands and legs at the office.
How did we handle these losses, you might ask? Not particularly well at the time. We grieved, cried a lot, and then couldn't cry anymore. At that point, we just put away our dreams and put our lost capabilities in lockup. We refused to dwell on the "what might have beens." If we did that, the future would be hopeless.
Instead, we dreamed new dreams -- by this time, Bob was totally disabled, SO --where could we go or do what, all in a wheelchair? Well, we found lots of possibilities. We have flown to Puerto Rico and Las Vegas, cruised up the Alaska coast and the Mediterranean, visited museums, seen all the movies and a few Broadway shows. Plus, lots of window shopping and time in the park with our dog, Opal.
As foretold by that social worker in the doctor's office, ALS was not done yet. 5 years ago, Bob did, indeed, suffer a respiratory failure. But the social worker hadn't known of Bob's determination to live or of the lucky streak that has followed him throughout his life. Even though we were in a Boston hotel room, Bob's caretaker was with him when Bob stopped breathing, called 911, and the technicians managed to get an emergency tracheostomy into him in the nick of time to save his life. From then til now, Bob survives on a life-support ventilator and a stomach feeding tube.
As foretold by that social worker in the doctor's office, ALS was not done yet. 5 years ago, Bob did, indeed, suffer a respiratory failure. But the social worker hadn't known of Bob's determination to live or of the lucky streak that has followed him throughout his life. Even though we were in a Boston hotel room, Bob's caretaker was with him when Bob stopped breathing, called 911, and the technicians managed to get an emergency tracheostomy into him in the nick of time to save his life. From then til now, Bob survives on a life-support ventilator and a stomach feeding tube.
He spent 3 weeks in the well known Helen Hayes Rehabilitation Hospital so that our caretakers, our 3 sons and myself could learn the operation of the ventilator equipment so Bob could continue living at home successfully, and not in a nursing facility.
Even with the tracheostomy, Bob was able to use his voice quite well for almost 3 more years. As with everything for the ALS patient, however, his voice also slowly faded until he no longer could speak. That was probably the most devastating loss of all. Not only for communication, but Bob had enjoyed a lifetime hobby of singing. So --another wall to climb. But, thankfully, there is one thing ALS does not affect --and that is the brain. Bob thinks and understands as well as ever.
Even with the tracheostomy, Bob was able to use his voice quite well for almost 3 more years. As with everything for the ALS patient, however, his voice also slowly faded until he no longer could speak. That was probably the most devastating loss of all. Not only for communication, but Bob had enjoyed a lifetime hobby of singing. So --another wall to climb. But, thankfully, there is one thing ALS does not affect --and that is the brain. Bob thinks and understands as well as ever.
And that brings us up to date -- the eye-responsive computer became Bob's new voice. With this technology, he wrote his memoir "NOT IN KANSAS ANYMORE," telling his life story in his own words. It took Bob 13 months to write --each letter of each word produced by a separate eye movement. With drafts, edits and rewrites, more than a million eye clicks.
I hope you will read and enjoy Bob's fascinating, life affirming and inspiring life story. Thank you.
This is beautiful maureen - so inspiring.
ReplyDeletelove to all -
Jenni